A web-based decision aid for shared decision making in pelvic organ prolapse: the SHADE-POP trial.

INTRODUCTION AND HYPOTHESIS: Among women worldwide, pelvic organ prolapse (POP) is a common problem. There are three different treatment options for POP: pelvic floor muscle therapy, pessary treatment and prolapse surgery. As none of the three treatment options is clearly superior, shared decision making (SDM) is very important. A decision aid (DA) is known to facilitate patient participation and SDM. We hypothesise that the use of a web-based DA for POP increases patients' satisfaction with information and care and reduces decisional conflict. METHODS: This two-arm, multicentre, cluster randomised controlled trial was performed in women with POP in five different Dutch hospitals. The control group received usual care (UC) and the intervention group received the DA in addition to UC. Primary outcome measures were satisfaction with treatment decision making and satisfaction with information. Analyses were performed using independent sample t tests, Chi-squared tests, and multilevel linear regression analyses. RESULTS: Between the DA group (n=40) and the UC group (n=56) no differences were found concerning patients' satisfaction with information, with scores of 45.63 and 46.14 out of 50 respectively (p=0.67). Also, no differences were found concerning the perceived role in decision making, as patients scored 46.83 in the DA group and 46.41 in the UC group, out of a maximum of 54 (n=0.81). CONCLUSIONS: No differences were found concerning patients' satisfaction with information and treatment decision making between the DA and UC. However, both groups scored high on the questionnaires, which suggests that the decision process is already of high quality.

SENTIREC - The sentinel node mapping in women with cervical cancer study - Patient-reported early lymphedema and its impact on quality of life.

OBJECTIVE: To evaluate patient-reported incidence and severity of early lymphedema and its impact on quality of life (QoL) after sentinel lymph node (SLN) mapping only and after SLN and pelvic lymphadenectomy (PL) in women undergoing surgery for early-stage cervical cancer. METHODS: In a national prospective multicenter study, we included women with early-stage cervical cancer from March 2017-January 2021 to undergo radical surgery including SLN mapping. Women with tumors >20 mm underwent completion PL. The incidence and severity of early lymphedema and its influence on QoL were evaluated using validated patient-reported outcome measures before surgery and three months postoperative. We investigated changes over time using linear regression. RESULTS: Two hundred of 245 (81.6%) included women completed questionnaires at baseline and three months postoperatively. The incidence of early lymphedema was 5.6% (95% CI 2.1-11.8%) and 32.3% (95% CI 22.9-42.7%) in women who underwent SLN mapping only and SLN + PL, respectively. Lymphedema symptoms in the legs, genitals, and groins increased in both groups postoperatively but three times more in women who underwent PL. Lymphedema symptoms after SLN + PL significantly impaired physical performance (p = 0.001) and appearance (p = 0.007). Reporting lymphedema was significantly associated with impaired body image, physical-, role-, and social functioning, and a high level of fatigue. CONCLUSIONS: SLN mapping alone carries a low risk of lymphedema in women undergoing surgery for early-stage cervical cancer. In contrast, completion PL is associated with a high incidence of early lymphedema. Reporting lymphedema is associated with significant impairment of several physical, psychological, and social aspects of QoL.

Physical Activity is Associated with Health Related Quality of Life in Lymphoma Survivors Regardless of Body Mass Index; Results from the Profiles Registry.

BACKGROUND: Being obese and having a sedentary lifestyle is associated with impaired health-related quality of life (HRQoL) among cancer survivors. The aim of the present study is to investigate the combined influence of body mass index (BMI) and physical activity on HRQoL in lymphoma survivors. METHODS: Lymphoma survivors diagnosed between 1999 and 2012 were invited to complete questionnaires about body height and weight, physical activity and HRQoL using the EORTC QLQ-C30. Multivariable analyses were conducted to evaluate the association of BMI and physical activity on HRQoL. RESULTS: 1.339 lymphoma survivors responded (response rate of 72%) of whom 43% had a healthy weight, 41% were overweight and 14% were obese. They spent on average 10 h, on moderate to vigorous physical activity (MVPA) per week. Multivariable linear regression analysis shows that relatively high active survivors reported higher HRQoL scores and less fatigue compared to relatively low active lymphoma survivors, regardless of BMI. CONCLUSION: MVPA was associated with higher HRQoL in lymphoma survivors regardless of BMI. Further studies, are needed to investigate effects of healthy lifestyle changes to improve HRQoL in lymphoma survivors. Research in understanding association of lifestyle factors may guide future support for lymphoma cancer survivors.

The relation between sleep quality, sleep quantity, and gastrointestinal problems among colorectal cancer survivors: result from the PROFILES registry.

PURPOSE: Common residual symptoms among survivors of colorectal cancer (CRC) are sleep difficulties and gastrointestinal symptoms. Among patients with various gastrointestinal (inflammatory) diseases, sleep quality has been related to gastrointestinal symptoms. For CRC survivors, this relation is unclear; therefore, we examined the association between sleep quality and quantity with gastrointestinal symptoms among CRC survivors. METHODS: CRC survivors registered in the Netherlands Cancer Registry-Southern Region diagnosed between 2000 and 2009 received a survey on sleep quality and quantity (Pittsburgh Sleep Quality Index) and gastrointestinal symptoms (European Organisation for Research and Treatment of Cancer, Quality of Life Questionnaire-Colorectal 38, EORTC QLQ-CR38) in 2014 (≥ 4 years after diagnosis). Secondary cross-sectional data analyses related sleep quality and quantity separately with gastrointestinal symptoms by means of logistic regression analyses. RESULTS: In total, 1233 CRC survivors were included, of which 15% reported poor sleep quality. The least often reported gastrointestinal symptom was pain in the buttocks (15.1%) and most often reported was bloating (29.2%). CRC survivors with poor sleep quality were more likely to report gastrointestinal symptoms (p's < 0.01). Survivors who slept < 6 h were more likely to report symptoms of bloating or flatulence, whereas survivors who slept 6-7 h reported more problems with indigestion. CONCLUSIONS: Worse sleep quality and short sleep duration were associated with higher occurrence of gastrointestinal symptoms. IMPLICATIONS FOR CANCER SURVIVORS: Understanding the interplay between sleep quality and gastrointestinal symptoms and underlying mechanisms adds to better aftercare and perhaps reduction of residual gastrointestinal symptoms in CRC survivors by improving sleep quality.

Cancer-related psychosocial factors and self-reported changes in lifestyle among gynecological cancer survivors: cross-sectional analysis of PROFILES registry data.

PURPOSE: Obesity is prevalent in gynecological cancer survivors and is associated with impaired health outcomes. Concerns due to cancer and its treatment may impact changes in lifestyle after cancer. This study aimed to assess the association between cancer-related psychosocial factors and changes in physical activity and diet, 18 months after initial treatment among gynecological cancer survivors. METHODS: Cross-sectional data from the ROGY Care study were used, including endometrial and ovarian cancer patients treated with curative intent. The Impact of Cancer Scale (IOCv2) was used to assess cancer-related psychosocial factors. Self-reported changes in nutrients/food groups and in physical activity post-diagnosis were classified into change groups (less/equal/more). Multivariable logistic regression models were used to assess associations. RESULTS: Data from 229 cancer survivors (59% endometrial, 41% ovarian, mean age 66 ± 9.5, 70% tumor stage I) were analyzed. In total, 20% reported to eat healthier from diagnosis up to 18 months after initial treatment, 17% reported less physical activity and 20% more physical activity. Health awareness (OR 2.79, 95% CI: 1.38; 5.65), body change concerns (OR 3.04 95% CI: 1.71; 5.39), life interferences (OR 4.88 95% 2.29; 10.38) and worry (OR 2.62, 95% CI: 1.42; 4.85) were significantly associated with less physical activity up to 18 months after initial treatment whereby gastrointestinal symptoms were an important confounder. CONCLUSION(S): This study underlines the need to raise awareness of the benefits of a healthy lifestyle and to provide tailored lifestyle advice, taking into account survivors' health awareness, body change concerns, life interferences, worry and gastrointestinal symptoms, in order to improve health behavior among gynecological cancer survivors. TRIAL REGISTRATION: http://clinicaltrials.gov Identifier: NCT01185626, August 20, 2010.

Challenges and controversies patients and (health care) professionals experience in managing vaginal, vulvar, penile or anal cancer: The SILENCE study.

OBJECTIVE: Patients with vaginal, vulvar, penile or anal cancer experience deteriorated psychosocial functioning and decreased Quality of Life (QoL). The aims of this study were to explore (1) the challenges and controversies patients experience in managing vaginal, vulvar, penile or anal cancer; their unmet needs; and how this affects their psychosocial functioning and (2) the gaps health care professionals (HCPs) experience in providing psychosocial support and potential improvements in care. METHODS: Semi-structured interviews with patients with vaginal, vulvar, penile or anal cancer and with HCPs were conducted. All interviews were transcribed verbatim and thematically analysed. RESULTS: Fourteen patients (86% female; mean age 55.5) and 12 HCPs (75% female; mean age 46.4) participated. Four themes were identified: (1) recognisable symptoms but unfamiliar diagnosis, (2) 'double hit' has severe impact on psychosocial functioning, (3) personal and tailored information is important but not guaranteed and (4) all-encompassing care to improve psychosocial functioning and QoL. CONCLUSION: Patients with vaginal, vulvar, penile or anal cancer encounter a lack of awareness and knowledge about their rare cancer type, difficulties regarding communication and long-term changes in body image and sexuality. Awareness of symptoms should be raised and psychosocial care should be offered on a structural basis.

Symptom clusters in 1330 survivors of 7 cancer types from the PROFILES registry: A network analysis.

BACKGROUND: Research into the clustering of symptoms may improve the understanding of the underlying mechanisms that affect survivors' symptom burden. This study applied network analyses in a balanced sample of cancer survivors to 1) explore the clustering of symptoms and 2) assess differences in symptom clustering between cancer types, treatment regimens, and short-term and long-term survivors. METHODS: This study used cross-sectional survey data, collected between 2008 and 2018, from the population-based Patient Reported Outcomes Following Initial Treatment and Long Term Evaluation of Survivorship registry, which included survivors of 7 cancer types (colorectal cancer, breast cancer, ovarian cancer, thyroid cancer, chronic lymphocytic leukemia, Hodgkin lymphoma, and non-Hodgkin lymphoma). Regularized partial correlation network analysis was used to explore and visualize the associations between self-reported symptoms (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire) and the centrality of these symptoms in the network (ie, how strongly a symptom was connected to other symptoms) for the total sample and for subgroups separately. RESULTS: In the total sample (n = 1330), fatigue was the most central symptom in the network with moderate direct relationships with emotional symptoms, cognitive symptoms, appetite loss, dyspnea, and pain. These relationships persisted after adjustments for sociodemographic and clinical characteristics. Connections between fatigue and emotional symptoms, appetite loss, dyspnea, and pain were consistently found across all cancer types (190 for each), treatment regimens, and short-term and long-term survivors. CONCLUSIONS: In a heterogenous sample of cancer survivors, fatigue was consistently the most central symptom in all networks. Although longitudinal data are needed to build a case for the causal nature of these symptoms, cancer survivorship rehabilitation programs could focus on fatigue to reduce the overall symptom burden.

Psychological distress and lower health-related quality of life are associated with need for dietary support among colorectal cancer survivors with overweight or obesity.

OBJECTIVE: Two-third of colorectal cancer (CRC) survivors are overweight or obese. Psychological distress and low health-related quality of life (HRQoL) may be barriers to improving diet. We aimed to assess associations between psychological distress and HRQoL and the need for dietary support in CRC survivors with overweight or obesity. METHODS: All alive individuals diagnosed with CRC between 2000 and 2009, as registered by the Dutch population-based Eindhoven Cancer Registry, were eligible for participation and received a questionnaire. Multivariable logistic regression analyses were conducted to assess associations between HRQoL (EORTC QLQ-C30), symptoms of anxiety and depression (HADS), and self-reported need for dietary support (single-item). RESULTS: A total of 1458 completed the questionnaire (response rate 82%), and 756 (43%) had a BMI of 25.0 or higher and complete data on "need for dietary support" and were included for analyses. BMI ranged between 25.0 and 60.6 (mean, 28.9; SD, 3.6). The majority (71.7%) was overweight (BMI ≥ 25), and 28.3% obese (BMI ≥ 30). Twenty-one percent reported a need for dietary support which was associated with more psychological distress and lower HRQoL. Those who experienced symptoms of anxiety or depression were more likely to report a need for dietary support (27.6% and 28.7%) than those who did not experience symptoms of anxiety (12.3%; OR 2.02; 95% CI 1.22-3.35) or depression (13.5%; OR 1.96; 95% CI 1.19-3.22). CONCLUSIONS: Results suggest that psychological distress and lower HRQoL should be taken into account while promoting a healthy diet in overweight or obese CRC survivors since these factors may hinder adherence to a healthy diet.

Is sleep associated with BMI, waist circumference, and diet among long-term colorectal cancer survivors? Results from the population-based PROFILES registry.

PURPOSE: In the general population, poor sleep quality and short sleep duration are associated with a higher body mass index (BMI) and waist circumference (WC), and an unhealthy diet. The aim of this study was to assess if the association between sleep quality and duration and BMI, WC, and diet quality also exists among colorectal cancer (CRC) survivors, as many CRC survivors have an unhealthy weight and diet. METHODS: Cross-sectional data from a longitudinal CRC cohort were used. In this study, survivors were 4-13 years post diagnosis. The Pittsburgh Sleep Quality Index (PSQI) was used to assess both sleep quality and sleep duration. Diet quality was assessed by scoring adherence (low, moderate, high) to the 2007 World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR) recommendations of five food groups and nutrients: fruit and vegetables, dietary fiber, red and processed meat, alcoholic beverages, and sugary drinks, using a brief diet screener. BMI and WC were self-measured. Associations were analyzed by multivariable linear and multinomial logistic regression analyses. RESULTS: Among 1002 CRC survivors, 23% reported poor sleep quality (PSQI score ≥ 8) and 24% reported short sleep duration (≤ 6 h). No associations between sleep and BMI, WC, and diet quality were found. CONCLUSION: Sleep problems are common in long-term CRC survivors; however, sleep quality and duration was not associated with BMI, WC, and diet quality in this population. It is unknown why the results differ from findings in the general population.

Self-management and adherence to recommended follow-up after gynaecological cancer: results from the international InCHARGE study.

OBJECTIVE: To assess the relationship between self-management skills and adherence to follow-up guidelines among gynecological cancer survivors in the Netherlands, Norway, and Denmark, and to assess the relationship between adherence to follow-up programs and use of additional healthcare services. METHODS: For this international, multicenter, cross-sectional study, we recruited gynecological cancer survivors 1-5 years after completion of treatment. Information on follow-up visits, use of healthcare resources, self-management (measured by the Health Education Impact Questionnaire), clinical characteristics, and demographics were obtained by validated questionnaires. Participants were categorized as adherent if they attended the number of follow-up visits recommended by national guidelines, non-adherent if they had fewer visits than recommended, or over-users if they had more visits than recommended. RESULTS: Of 4455 invited survivors, 2428 (55%) returned the questionnaires, and 911 survivors were included in the analyses. Survivors with high self-management most frequently adhered to recommended follow-up. Non-adherent survivors showed lower self-management in the health-directed activity domain (OR 1.54, 95% CI 1.03 to 2.32) than adherent survivors. No other associations between self-management and follow-up adherence were revealed. Non-adherent survivors tended to have endometrial cancer, surgical treatment only, be older, and be Danish residents. Over-users reported more follow-up visits and also used additional healthcare services more frequently than adherent survivors. CONCLUSION: Low self-management appears to reduce the likelihood of adherence to national guidelines for gynecological cancer follow-up. Focusing on patient education for survivors at risk of low self-management to ensure adherence to recommended follow-up may improve personalization of follow-up.

Towards OPtimal TIming and Method for promoting sUstained adherence to lifestyle and body weight recommendations in postMenopausal breast cancer survivors (the OPTIMUM-study): protocol for a longitudinal mixed-method study.

BACKGROUND: The majority of postmenopausal breast cancer (PMBC) survivors do not adhere to lifestyle recommendations and have excess body weight. In this group, this is associated with poorer health-related quality of life and an increased risk of type II diabetes mellitus, cardiovascular disease, second primary cancers, cancer recurrences, and mortality. Gaining and maintaining a healthy lifestyle and body composition is therefore important. It is unknown when and how sustained adherence to these recommendations can be promoted optimally in PMBC survivors. Therefore, the OPTIMUM study aims to identify the optimal timing and method for promoting sustained adherence to lifestyle and body weight recommendations in PMBC survivors. METHODS: The OPTIMUM-study has a mixed-methods design. To assess optimal timing, a longitudinal observational study will be conducted among approximately 1000 PMBC survivors. The primary outcomes are adherence to lifestyle and body weight recommendations, readiness for change, and need for support. Questionnaires will be administered at 4-6 months after cancer diagnosis (wave 1: during treatment and retrospectively before diagnosis), 1 year after diagnosis (wave 2: after completion of initial treatment), and 1.5 years after diagnosis (wave 3: during follow-up). Wave 2 and 3 include blood sampling, and either wearing an accelerometer for 7 days or completing a 3-day online food diary (randomly assigned at hospital level). To assess the optimal method, behavioural determinants of the primary outcomes will be matched with Behavior Change Techniques using the Behaviour Change Technique Taxonomy. Qualitative research methods will be used to explore perceptions, needs and preferences of PMBC survivors (semi-structured interviews, focus groups) and health care providers (Delphi study). Topics include perceptions on optimal timing to promote adherence; facilitators and motivators of, and barriers towards (sustained) adherence to recommendations; and acceptability of the selected methods. DISCUSSION: The OPTIMUM study aims to gain scientific knowledge on when and how to promote sustained adherence to lifestyle and body weight recommendations among PBMC survivors. This knowledge can be incorporated into guidelines for tailored promotion in clinical practice to improve health outcomes.

Follow-up practice and healthcare utilisation of colorectal cancer survivors.

OBJECTIVE: To examine healthcare utilisation and adherence to colorectal cancer (CRC) follow-up guidelines. METHODS: A total of 2450 out of 3025 stage I-III CRC survivors diagnosed between 2000 and 2009 completed the Hospital Anxiety and Depression Scale, SF-12, EORTC QLQ-CR38 and Fatigue Assessment Score questionnaires, in December 2010. Multivariable regression analyses were performed to identify predictors for increased follow-up care (>1 visit than recommended by guidelines). RESULTS: In the first follow-up year, the average number of cancer-related visits to the general practitioner and medical specialist was 1.7 and 4.2, respectively. More than 80% of the CRC survivors was comfortable with their follow-up schedule, and 49-72% of them received follow-up according to the guidelines. Around 29-47% was followed more than recommended. Simultaneously, around 4-14% of the CRC survivors received less follow-up care than recommended. Survivors of stage III disease treated with chemotherapy received the most follow-up care. In addition, lower socio-economic status stoma and fatigue were associated with increased follow-up care. CONCLUSION: CRC survivors were predominantly followed according to national guidelines. Increased follow-up care is driven by advanced disease stage, chemotherapy, SES, stoma and fatigue. Future studies should investigate how increased follow-up care use can be reduced, while still addressing patients' needs.

Type of treatment, symptoms and patient satisfaction play an important role in primary care contact during prostate cancer follow-up: results from the population-based PROFILES registry.

BACKGROUND: With the increasing attention for the role of General Practitioners (GPs) after cancer treatment, it is important to better understand the involvement of GPs following prostate cancer treatment. This study investigates factors associated with GP contact during follow-up of prostate cancer survivors, such as patient, treatment and symptom variables, and satisfaction with, trust in, and appraised knowledge of GPs. METHODS: Of 787 prostate cancer survivors diagnosed between 2007 and 2013, and selected from the Netherlands Cancer Registry, 557 (71%) responded to the invitation to complete a questionnaire. Multivariable logistic regression analyses were performed to investigate which variables were associated with GP contact during follow- up. RESULTS: In total, 200 (42%) prostate cancer survivors had contact with their GP during follow-up, and 76 (16%) survivors preferred more contact. Survivors who had an intermediate versus low educational level (OR = 2.0) were more likely to have had contact with their GP during follow-up. Survivors treated with surgery (OR = 2.8) or hormonal therapy (OR = 3.5) were also more likely to seek follow-up care from their GP compared to survivors who were treated with active surveillance. Patient reported bowel symptoms (OR = 1.4), hormonal symptoms (OR = 1.4), use of incontinence aids (OR = 1.6), and being satisfied with their GP (OR = 9.5) were also significantly associated with GP contact during follow-up. CONCLUSIONS: Education, treatment, symptoms and patient satisfaction were associated with GP contact during prostate cancer follow-up. These findings highlight the potential for adverse side-effects to be managed in primary care. In light of future changes in cancer care, evaluating prostate cancer follow-up in primary care remains important.

Patterns and predictors of cancer-related fatigue in ovarian and endometrial cancers: 1-year longitudinal study.

BACKGROUND: Fatigue is a common and distressing symptom for patients with gynecologic cancers. Few studies have empirically examined whether it spontaneously resolves. This study was aimed at identifying longitudinal patterns of fatigue and predictors of clinically significant fatigue 1 year after treatment completion. METHODS: This was a prospective cohort study of women with newly diagnosed ovarian (n = 81) or endometrial cancer (n = 181) that did not progress or recur within 1 year of treatment completion. Symptoms of fatigue, depression, and anxiety were assessed after surgery and 6 and 12 months after treatment completion with the Fatigue Assessment Scale and the Hospital Anxiety and Depression Scale. Patients' fatigue scores over time were classified (scores of 22-50, clinically significant; scores of 10-21, not clinically significant). Logistic regression models were fit to examine associations between fatigue and patient characteristics. RESULTS: Among 262 participants, 48% reported clinically significant fatigue after surgery. One year later, 39% reported fatigue. There were 6 patterns over time: always low (37%), always high (25%), high then resolves (18%), new onset (10%), fluctuating (6%), and incidental (5%). Patients with fatigue after surgery were more likely to report fatigue at 12 months in comparison with others (odds ratio [OR], 6.08; 95% confidence interval [CI], 2.82-13.11; P < .001). Patients with depressive symptoms also had higher odds of fatigue (OR, 3.36; 95% CI, 1.08-10.65; P = .039), although only one-third of fatigued patients reported depressive symptoms. CONCLUSION: Nearly half of women with gynecologic cancers had clinically significant fatigue after surgery, whereas 44% and 39% had fatigue 6 months and 1 year later; this suggests that spontaneous regression of symptoms is relatively rare. Women who reported fatigue, depressive symptoms, or 2 or more medical comorbidities had higher odds of reporting fatigue 1 year later. Future studies should test scalable interventions to improve fatigue in women with gynecologic cancers.

Patients' information coping styles influence the benefit of a survivorship care plan in the ROGY Care Trial: New insights for tailored delivery.

BACKGROUND: In efforts to improve the implementation of survivorship care plans (SCPs), the authors assessed whether the impact of SCPs on patient-reported outcomes differed between patients with an information-seeking coping style (monitoring) versus those with an information-avoiding coping style (blunting). METHODS: In the Registration System Oncological Gynecology (ROGY) Care Trial, 12 hospitals in the Netherlands were randomized to deliver SCP care or usual care. All patients with newly diagnosed endometrial and ovarian cancer in the SCP care arm received an SCP that was generated automatically by their oncology provider through the web-based ROGY registration system. Outcomes (satisfaction with information provision and care, illness perceptions, and health care use) were measured directly after initial treatment and after 6, 12, and 24 months. Information coping style was measured at 12 months after initial treatment. RESULTS: Among patients who had a monitoring coping style (N = 123), those in the SCP care arm reported higher satisfaction with information provision (mean score: 73.9 vs 63.9, respectively; P = .04) and care (mean score: 74.5 vs 69.2, respectively; P = .03) compared with those in the usual care arm. Among patients who had a blunting coping style (N = 102), those in the SCP care arm reported a higher impact of the disease on life (mean score: 5.0 vs 4.5, respectively; P = .02) and a higher emotional impact of the disease (mean score: 5.4 vs 4.2, respectively; P = .01) compared with those in the usual care arm. CONCLUSIONS: SCPs may be beneficial for patients who desire information about their disease, whereas SCPs may be less beneficial for patients who avoid medical information, suggesting a need for tailored SCP delivery to improve survivorship care.

Having co-morbid cardiovascular disease at time of cancer diagnosis: already one step behind when it comes to HRQoL?

Background: The relation between cardiovascular disease (CVD) present at the time of cancer diagnosis and Health-Related Quality of Life (HRQoL) assessed years after cancer diagnosis has - to our knowledge - not been studied. The objective is, therefore, to examine the relation between co-morbid CVD at cancer diagnosis and HRQoL among cancer survivors diagnosed with colorectal, thyroid, prostate, endometrium, ovarian cancer, melanoma, (non-)Hodgkin lymphoma, chronic lymphocytic leukemia (CLL), or multiple myeloma (MM) in an exploratory population-based cross-sectional study.Material and methods: Analyses were performed on combined data sets from the PROFILES and Netherlands Cancer Registry (NCR). Data on co-morbid CVD at cancer diagnosis was extracted from the NCR. HRQoL was measured via PROFILES at a median of 4.6 years after cancer diagnosis. General Linear Model Analyses were run for the total group of cancer survivors and for each malignancy.Results: In total, 5930 cancer survivors (2281 colorectal, 280 thyroid, 1054 prostate, 177 endometrium, 389 ovarian cancer, 212 melanoma, 874 non-Hodgkin and 194 Hodgkin lymphoma, 242 CLL, and 227 MM survivors) were included. For the total group, survivors who had a CVD at cancer diagnosis (n = 1441, 23.4%) reported statistically significant and clinically important lower scores on global QoL and physical functioning and higher scores for dyspnea (p < .05) compared to those without CVD. Co-morbid CVD at cancer diagnosis was negatively related to global QoL, the five functional scales and the symptoms fatigue and dyspnea across most malignancies (i.e., colorectal, and prostate cancer, non-Hodgkin lymphoma, ovarium cancer, melanoma, and CLL). No significant relations were found among thyroid and endometrium cancer, Hodgkin lymphoma and MM survivors, likely due to small numbers.Conclusion: In conclusion, co-morbid CVD at cancer diagnosis was negatively related to HRQoL, especially to global QoL, physical and role functioning, and the symptoms fatigue and dyspnea.

Changes in health-related quality of life among gynecologic cancer survivors during the two years after initial treatment: a longitudinal analysis.

Background: While many cancer survivors experience persistent impairments in health-related quality of life (HRQoL) for extended periods of time, others recover soon after treatment. The aim of this research is to assess changes in health-related quality of life in endometrial and ovarian cancer survivors during two years post initial treatment, and to assess clinical and sociodemographic characteristics associated with those changes. Methods: This prospective population-based cohort study includes longitudinal data of endometrial (N = 221) and ovarian (N = 174) cancer survivors diagnosed between 2011 and 2014. The EORTC QLQ-C30 functioning scales were used to assess HRQoL after initial treatment and after 6, 12 and 24 months. Clinical (stage, treatment and comorbidities) and sociodemographic (age, marital status and socio-economic status) characteristics were obtained from the Netherlands Cancer Registry and through self-administered questionnaires. Linear mixed models were used to assess changes in HRQoL over time and characteristics associated with these changes. Results: Among both endometrial and ovarian cancer patients, HRQoL improved within the first 6 months after initial treatment. Changes in HRQoL were mainly associated with clinical characteristics including comorbidities, treatment and tumor stage, and to a lesser extent with sociodemographic characteristics such as socioeconomic status. However, these associations varied per tumor type. Endometrial cancer survivors, who received radiotherapy and had no comorbidities, reported greater improvements in some HRQoL scales over time. Ovarian cancer patients who received chemotherapy and with advanced tumor stages reported poorer functioning during treatment. Most functioning domains (global health, physical and role functioning) recovered to levels of patients without chemotherapy or with early-stage disease after 12 months, but cognitive and social functioning remained impaired. Conclusion: Some subgroups of patients, including those with multiple comorbidities, with an advanced tumor stage and who received chemotherapy, may be in need of additional support as they are less likely to show improvements in HRQoL over time.

Do people improve health behavior after their partner is diagnosed with cancer? A prospective study in the Danish diet, Cancer and Health Cohort.

Background: The cancer diagnosis is regarded as a stressful life event that is thought to trigger a teachable moment to induce health behavior changes among cancer patients. However, this may also hold true for their partners. We assessed if partners of cancer patients make more health behavior changes compared to persons whose partner remained cancer-free. Methods: Lifestyles was assessed in the prospective Danish Diet, Cancer and Health study. Logistic regression analyses were used to assess health behavior change among partners of cancer patients (n = 672) compared to partners of persons who remained cancer-free (n = 5534). Additionally, associations in two subgroups were assessed: bereaved partners and partners of patients who remained alive after cancer. Results: Partners of cancer patients were more likely to decrease their alcohol intake compared to partners of persons who remained cancer free. This finding could mainly be attributed to bereaved partners. Moreover, bereaved partners were also more likely to decrease their BMI. In contrast to our hypothesis, bereaved partners were more likely to decrease fruit intake and increase sugared beverages compared to partners of persons who remained cancer free. In general, men tended to improve their physical activity, while women tended to worsen their physical activity following the cancer diagnosis of their partner. Conclusions: A cancer diagnosis in the partner does seem to improve health behavior change only for alcohol intake. Bereaved partners tend to worsen dietary behaviors after the patient's death.

Presence of gastro-intestinal symptoms in ovarian cancer patients during survivorship: a cross-sectional study from the PROFILES registry.

OBJECTIVE: To assess the association between gastro-intestinal (GI) symptoms and health-related quality of life (HRQoL) in ovarian cancer (OC) survivors. METHODS: Women diagnosed with OC between 2000 and 2010 as registered in the Netherlands cancer registry (n = 348), received a questionnaire on socio-demographic characteristics, HRQoL (EORTC-QLQ-C30), ovarian cancer-specific symptoms including GI (EORTC-QLQ OV28), and psychological distress (HADS). Data collection took place in 2012. RESULTS: Of 348 women diagnosed with ovarian cancer, 191 (55%) responded. Of all participants, 69% were eligible for analysis (n = 131). In 25% of all women, high level GI symptoms occurred (n = 33). In 23% of all women, recurrence of OC occurred (n = 30). Regression analysis showed that presence of high levels of GI symptoms during survivorship was associated with lower functioning on all HRQoL domains (except for emotional functioning), more symptoms, and higher levels of distress. QoL was negatively affected in those who had few and high levels of GI symptoms. QoL of those with recurrent disease was worse than those without recurrent disease. CONCLUSION: A substantial proportion of OC survivors experience GI symptoms, regardless of the recurrence of disease. Health care professionals should be aware of GI symptoms during survivorship in order to refer their patients for supportive care interventions to reduce symptoms or help survivors to cope. Further research should examine the cause of GI symptoms during OC survivorship among those with non-recurrent disease.

Illness perceptions are associated with higher health care use in survivors of endometrial cancer-a study from the population-based PROFILES registry.

OBJECTIVES: According to the Common Sense Model of self-regulation, cancer survivors construct perceptions of their illness as a (mal)adaptive mechanism. These perceptions might impact on health care use. We aimed to explore the association between illness perceptions and health care use in stage I-II endometrial cancer (EC) survivors, and whether these associations differed by time since diagnosis. METHODS: A survey was conducted in 2008 by the population-based PROFILES registry among EC survivors diagnosed between 1999 and 2007. Survivors (n = 742, 77% response) completed the Brief Illness Perception Questionnaire (BIPQ) and questions on health care use in the past 12 months. Clinical data were accessed from the Netherlands Cancer Registry. Multiple logistic regression was used to evaluate the relationship between illness perceptions and health care use. RESULTS: Between 15 and 22% of the survivors had negative illness perceptions. Survivors with more negative perceptions on consequences, timeline, treatment control, identity, cognitive representation, concern, emotion, and emotional representation were more likely to make ≥ 1 visit to their family physician/general practitioner in relation to their cancer when compared with survivors with more positive illness perceptions. More negative perceptions on consequences, timeline, identity, and concern were associated with ≥ 2 general or cancer-related visits to the medical specialists. The association between negative illness perceptions and health care use was more prominent among long-term (>5 years post-diagnosis) EC survivors. CONCLUSIONS: Negative illness perceptions among EC survivors were associated with higher health care use. For individuals with maladaptive illness perceptions, visits to their health care provider may reduce worry about their illness. Future research might address the effects of intervening in maladaptive illness perceptions on use of health care in this category of survivors.